Richard Rieser talked to mother and daughter, Carly and Honey Jones, about their joint experience of autism.
Q: Tell us something about you and your family, particularly you and Honey?
A: My daughter Honey and I have , I guess, an average mother and daughter relationship. We enjoy spending time together and have lots in common. However we have something else in common that maybe other mothers and daughters do not; we are both Autistic.
In fact Honey was the first Autistic female I had met: my own daughter.
So little was known about Autistic women and girls when I was growing up that I wasn’t diagnosed until I was 32; my daughter and her younger sister were diagnosed as Autistic at 2 and 6 years old.
Q: Tell us something about autism, how it affects you and people’s reactions?
A: The way our Autism affects us is actually a great deal more than people may assume from the outside looking in. Outwardly we may seem to be “mild” in our Autism presentation but a mild diagnosis does not mean a mild life experience – in many cases it means the non-autistic person’s experience of us is milder perhaps?
For Honey it means a great deal of anxiety and being misunderstood – it meant having to choose at 13 to have the human right to an education or her human right to health – not both, as both for an Autistic female is near impossible in the current educational system.
For me it means anxiety, a need to second guess every action and for a predictable outcome, all the while being not so capable at predicting an outcome at all? It means a great deal of social isolation and loneliness, but it also means concentrated interests and intelligence (without any exams to prove it as I couldn’t cope at school either!).
Q: Why do you think it is important for Honey to be included in mainstream education?
A: It is so vital that Honey and indeed her sister and other girls like her have the access to participate in mainstream education; there is a whole wealth of subjects taught at secondary school level that have very little to do with academia; friendships, routine, time management, health education, sex education, conflict resolution, all of which Autistic females and males can go without when school isn’t equipped, trained and experienced in how autism looks and how to support, understand and most importantly RESPECT the wonderful asset Autism is.
Q: What have been the challenges?
A: The challenges Honey had at school were totally avoidable – sadly her mistreatment was not in full by other students, who would be perhaps too young to understand Autism, but by those who should have known better and protected her; a handful of educational staff. On one occasion in 2008 a teacher made a dunce hat out of red cardboard, wrote in black marker “I will be polite to everyone I meet”, and forced her, then only six, to wear it for a full school day.
Q: What were the high and low points of Honey’s inclusion?
A: I moved Honey to a local school with an autism unit attached to it. This was a perfect situation as although Honey did not require the unit full time she could dip in and out of the unit’s support, and the whole school had an autism ethos as all staff were trained and had hands-on experience of autism – rather than read a book once! Unfortunately my daughter aged out of that ideal school situation and moved to secondary school which was just awful – it ended up with a very anxious child unable to learn – and some teachers being told some home truths after months of them proclaiming they knew all about autism only for one staff member to severely punish my daughter for “not looking at him when he was talking”.
Q: What needs to change?
A: There needs to be more research, understanding and action to bring our educational systems into the future and to ensure inclusion really does mean all. No child should have to choose between their health and education. Home education has helped my daughter, but it isn’t the answer. It is elected exclusion, as inclusion was not an option open to her. Autism training by autistic adults in schools is a must. In fact it should be done yearly for both students and staff as a legal requirement.
A stop gap is the Olley Edwards academy, set up in Jan 2015 for home educated Aspergers /Autistic/ PDA children who did not flourish emotionally in school and are therefore home educated. The academy’s aim is to prevent isolation and seek inspiration and friendship in activities and small meet ups for those unable to attend larger events.
Carly and Honey run a website to help other families with autistic members.